Self Diagnosis ...LS ...Nedd help with diet, meal planning, advice, Thanks

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First ’Itch 18 month ago 2 Drs said there’s nothing there. Self-diagnose LS after much research. Itch varies in occurrence and intensity, mainly on the labia majore here can be severe itch just on the inside, labia shrinking in size and skin thinner, small nodules around some hair follicles, when these are bigger & inflamed the itch can be intense, I rarely scratch but on the odd occasion for a few seconds then the skin will peel away and it is raw, now there is a good few raised patches varying in size, perineum mild itch & a bit stingy & anus mild itch occasionally., Last week Dr’s with photos, examination, now waiting for appointment for biopsy. Epilepsy age 11, PCOS age 21, always anxiety to some degree, stressful life, Early Menopause age 40’s with all that comes with it & ear wax problems.

 I was coping, just! Even with my back & thigh pain. Until it was confirmed I had Arthritis, DDD & spinal stenosis, severe on left, Central & Lateral 1,2,3,4 & 5 lower vertebrae diagnosed 18 month ago. Then I fell to bits, Dr’s hadn’t believed me for 5 years!!! They thought I needed to see a counsellor, I was Mad, Stressed and Scared! Then I got Tinnitus after my ears got totally blocked I thought I was going Nuts, then I had 2 virus’s one after the other (pain!). So there is a strong chance all this 18 month ago triggered LS.

I am now unsure what to eat, Trying to miss out sugar, wine, gluten, night shades, ( never really ate junk or packaged foods or much sugar anyway, was always reasonably healthy because of other health conditions) Now I’m losing weight  was relatively slim, now I’m 8 stone not good!.

Can anyone give me a list of basic foods so I can cook meals with less fear, I am constantly googling & and it’s not good for my head! I would really appreciate, your help on this matter. Then another time I’ll concentrate on treatments, etc but first I must put on weight & when your scared to eat it’s really difficult.

Thanks, sorry It’s a lot to put in a first posting.

           

 

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  • Posted

    Hi Purplelady- You need to clck on Nancy KB, she has all the info on foods to wat/ aboid, supplements to take and why and gas helped me immensely! I am 1 month diagnosed and this forum has been a God- send! Good luck and kniw we are all here for you! 
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  • Posted

    Hi, stress can cause LS and it sounds like you have had a rough ride. 

    With regard to foods, many of us have found sugar to be a trigger, or gluten or dairy.  Diet is only part of the equation, and you will need to do some serious reading.  If you look at some of the older threads on this site you will learn a lot.  As already mentioned Nancy that posts on here has posted a very informative list on nutrition to peruse.

    Remember to cut out only one thing at a time otherwise you will not know what your particular trigger is.  Start off with reducing sugar, remember that sugar is in things like carbohydrates and wine..wine is a trigger for many.  If you find that reducing your sugar intake has made no difference whatsoever then look at dairy and then finally gluten.   

    To give you an example...If I have a glass of wine I'm okay, but if I have another one the next day  I can tell that my Vjay hasn't liked it...I realize this sounds extreme, and I suppose it is, but I am very sensitive, and although most people dont feel it quite so quickly, over time if you are eating something that your body reacts to eventually you may have flare-ups.  

    It may seem awful at first, but once you know how to manage LS you will feel much better.

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    • Posted

      Thanks Guppy, there is so much to read & so many helpful remedies and the diet, etc, but I will get there and gain some control eventually. This site is better than any medical practionar smile

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  • Posted

    Hi there PurpleLady, 

    Not too much at all, dear, really helpful. and our condolences on such a long list of discomfort.  Really glad you found us!  Sounds lke many of you have discovered that you go unheard by doctors for years sometimes.  Okay well the good part is that the LS has brought you to us.

    If you hadn't known yet that your spinal stenosis and rheumatoid arthritis as well as DDD are autoimmune diseases, you got it now for sure with LS.  That means I've researched for months to find the nutritional deficiencies indications in autoimmunity and have built up a list of what vitamin and minerals need to be brought up to better than sufficiency.  For me personally that has been more important to rebuliding a strong immune system than obsessing over what not to eat.   a woman named Guppy really helped with the food part whan it started here last december. She suggested the elimination method. (oh how I resisted giving up sugar.. and dairy) but she turned out to be quite right. smiles. 

    What was important is that she tells us that what the triggers are for each of is individual and the best way to determine that is to keep a log. I watched how I FELT within an hour of eating what i wanted and was used to cooking. It really is as simple as that.  For instance, I don't feel any problem from eating the occasional wheat with glutan.. I tried going glutan free but what was the point? that was not my trigger.  Others here will be able to share their expereinces of how they found and recorded there triggers. 

    This link to my longish article of my findings on how to rebuild our immune systems includes also that we need to be taking a fermented product everyday to help out what is called leaky gut

    YOu might choose to eat what makes you feel good for helping to put more weight back on and see if you are okay with that. if you only get a bit of a tummy recognistion but not a terrible LS flare then maybe taking digestive enzymes with each meal will let you do that. 

    So please do read my article when your eyes aren't crossed eyed and see if anything speaks to you. I've got the  amounts I've researched as well. For instance do yo know about the worldwide deficiency of Vitamin D? Do yo know your score?  

    Blessings, oh! I hd loked up DDD before writing this - did you know that vitamin d deficincy is known as one cause or exacerbating influence... so let's get healthy! 

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    • Posted

      Hi Nancy, you speak a lot of sense re diet etc but just a word of warning for some people re vitamin D. If you are on other medicines it would be worth speaking to your pharmacist or GP before launching into the herbal shop for said vitamin D and taking what I've subsequently found out to be well over the recommended amount, albeit it stated on the bottle that the dosage was fine at 2500iu/ 0.5mls to be taken twice a day. I am in Uk and would advise reading the NHS Choices web page on vitamin D and following those guidelines. I take other medicines and after feeling grotty for months had my vitamin D levels checked which were very high and my calcium also affected so vitamin D toxicity does exist as I've unfortunately learnt!

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    • Posted

      I do probiotics, natural yogurt, home cooking, healthy foods, plenty of fish, etc, oats, fruit in moderation, only 1 small glass red wine a night, rarely sugar, no packaged or fried foods, avoid additives, MSG, Glutamate, physically active, walks, no car, epsom salts, baking powder, emu oil. Recently used sudo cream for raw skin, peeling, it was great, but can't clean it off afterwards so now bought similar creams but in an ointment.

      Thanks for replying,  there is so much to read & so many helpful remedies and the diet, etc, but I will get there and gain some control eventually. This site is better than any medical practionar smile

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    • Posted

      Hi Joe, that is very true about Vit D, I was put an vit D  for my back conditions, by my Dr 4 four years ago,  but at my last check up, I was told to come off it as it was too high. smile

       

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    • Posted

      HI there PurpleLady.... Have you had a chance to read my article and see the link to medical researchers who mention that to back of autoimunity we need a D level above about 60 ng/dl?  This is all really fairly new news within the last 6 or so years. no every doctor has time to read it all. So you might want to ask him what your number was exactly.  HIgh might be something north of 95 in today's best knowledge. 

       

      ALSO your dear doctor may not have read that Vitamin A should be taken with Vitamin D3 at approximately 3 - 5 time times as much A as D that will keep either one from becoming "too High" they balance each other.  .. and magnesium is also part of the cofactors that keep things working well and helping ot heal.  take a pak at my article if you care to.   

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    • Posted

      Hi Purplelady, thank you for that, not sure what your levels were but mine were 110. My GP is really good and is well used to me throwing all things "alternative" at any illness I have. Being tested for vitamin D levels is not common within the UK and the only reason mine were tested was because the medicine I am on requires testing for calcium levels and as this was raised they had to investigate why, it appears raised calcium can be related to raised vitamin D... I think I will just stick with the healthy eating for the moment!

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  • Posted

    oops I just posted a nice long welcome to you Purple Lady, and info but it is being moderated as admin autobot sometimes does, but I had forgotten to inlcude the link to my long reference article to autoimmune nutritional protocol for health anyway, so here tis: 

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    blessings more soon, 

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    • Posted

      Nancy could you please give me the name of a brand of Borax which is ok for Lichen & possibly where to buy it as I have heard amazing things about it, I can't seem to get hold of it locally. I haven't read too much on this site as my son is around a lot once he goes off to college I will have more time to myself as I don't want him to catch me researching this online. Thankyou

       

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    • Posted

      HI Purplelady...

      In the us we can get the brand called 20 Mule Team Borax in the laundry section in a box usually on the top shelves of any supermarket.

      I'm not sure about the UK. Others here have mentioned not being able to find it and ordering the 20 mule team from amazon.. a rather expensive shipping charge. I found this statement online: 

      "In the UK, Borax which is called sodium tetraborate decahydrate, is sold as a naturally occurring mineral compound best known as a laundry booster and water softener. ... Borax is not flammable and is not reactive.....".   

      Perhaps you can call around using the chemical name. 

      BUT, dearheart. PurpleL....If it's not readily available where you are - worry not, Baking soda in the bath water is almost as alkalizing as the borax. 

      The trace mineral BORON which is part of a recognized real proven need as a CO-FACTOR for Vitamin D3 and MAGNESIUM  et al in the AUTOIMMUNE Nutritional Supplements protocol  can be obtained in pill form at about 3 mg per pill.  Other websites have indicated that we probably need about 6 mg a day to effect balancing out autoimmune issues. 

      So, Purple... please don't feel you need to hide your proactive complementary health searches on the internet from your 18 year old son. after all he is the son of a woman with MULTIPLE autoimmune issues. i.e. he may possibly have inherited some antibodies from you. and if he knows that you are finding out about NUTRITION to help, he might be encouraged to become proactive about his own health as he tries to live through college years

      GRIN.. no really... it's hard enough to get a 20-something to listen to mom at all  ( I couldn't get my own daughter to check out what appeared to me to be a thyroid issue... FOR 6 friggin' years! and when she finally did she had thyroid cancer, not just hypothyroid. dang those beloved children....  so I'd rather embarrass them away anytime rather them being dead. 

      off soap box now.   

       

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    • Posted

      Dear NancyKB, I have to say, my son has permanent cystic type acne on his back so I became slightly obsessed with, foods, additives, toiletries, etc, many years ago (the acne did improve a great deal but never goes away).  I have researched so much over the years  concerning diet, digestion, health you name it & I taught my son everything I know including cooking healthy foods. He cooked, shopped & bought nearly all his own food for 12 month now he had a job when he left school school (and he knows, eat unhealthy & a break out is due.) low G.I, omega 3's, drinking water, etc, economizing, he knows so much & does his own research if he needs it. There is just the 2 of us as I am a lone parent, we have a great relationship & he has always listened to me.

      But  due to my Epilepsy & back conditions plus my mild anxiety for a few years I wouldn't want to give him this to worry about as well ' he would still like to think I'll get myself a boyfriend one day now he's off to college I waited until he was older, now how can I ever have a relationship!.

      Nancy I have my appointment with Gynecologist tomorrow, will find out exactly what I have hopefully its not LS. The last month, itch is most nights & intense, skin ends up raw takes a week to begin to scab then, itches before it has healed bits of skin & scabs come off & its raw again, its not getting a break down there, raw for 3 weeks. Naturally I have tried many oils, creams & washes & no sugar & gluten free plus healthy food choices always.. But even organic coconut oil, baking soda wash after each pee then dry with hairdryer didn't stand a chance against that itch about 3.30 A.m most nights. 

      My Aunt used to itch, & got Cancer of the Cervix 6 years ago she died 3 month ago so I am a little concerned especially when I'm low in mood.

      Can you recommend anything for raw skin?

      I have ordered on-line ..... BORAX SODIUM TETRABORATE DECAHYDRATE 200g-220g. Slime Maker. Pest Control.. Very Expensive. Can't get hold of it in any shops, stores in Ireland..

      Thanks for taking the time to read this & listen to me.

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    • Posted

      oh Good morning, Purple Lady,  Ah I too was a single mother and my daughter and I used ot have a really really close relationship. She's 33 now and lives 4 hours away so I don't see her much but once she ha her baby now 2 years old she's been more communicative again. smiles.  I think there is a reason that there are so many single parents the last few decades.. it might turn out to be a positive in that closeness department. We sure do need more young men raised in an atmosphere of compassion and cooperation instead of competitive violence and war mongering.  

      OH! so for really raw skin the go-to solution is diaper rash ointment with ZINC. You British use a different term.. nappies? for baby bottoms. 

      You haven't mentioned yet... if you've know your Vitamin D levels...  but Vitamin D3 with vitamin K2 and magnesium and Vitamin A (retinol - the real deal)  will very quickly (at least it did for me) bring things into a better comfort level. 

      IF you really don't want to be caught reading my write up yet. Just know that these nutritional supplements are proven to help with autoimmune diseases in general . (which acne is one of the 100+ known autoimmune conditions.  more later... maybe I can post a new Autoimmune Nutrition List without the word LS in it so you can print it off and feel comfortable to share  hugs

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